We wrapped up a busy two week run of appointments today. It's a relief to be done for awhile.
Her appointments went well. She weighs 11.5 lbs. When she was born she weighed 7.13lbs. She got down into the 6's when she was in the hospital. That means in the seven weeks she's been home she's nearly doubled her weight, which is awesome!

We will continue to have frequent check-ins with her Pediatrician mainly to make sure she keeps progressing as she should. They called her a miracle. We knew that.

Her Neuro appointment went well. They were pleased she hasn't had any seizures since coming off the vent (another miracle). They even let us lower the dosage of her meds a teeny bit. I was very happy about that. Her next check-in will be in four months. If she's still seizure-free at that point, we may be able to start weaning her from the medications. That would be incredible. She takes them twice a day and is definitely not a fan. The meds are the only lingering thing we've had to deal with since leaving the hospital. To have them go away would be huge.

Since Ellis is doing well they want to hold off on more scans until she's at least a year old. Her bodies been through a lot and it needs to rest, not more tests. I was very pleased she's steady enough now that they don't feel she needs them any time soon.

Steady is the name of the game. We need her to stay steady as she has.

For now our outlook is busy, and it will continue to be for the next year at least. Frequent nurse check ins, physical therapy check ins, home PT check ins, eye and ear testing, Neuro check ins. I try not to get overwhelmed at all that's ahead. I'm taking it appointment by appointment, until each one of them drops off because she's doing so well they are not needed.

Overall, every single doctors appointment we've received very positive feedback. Ellis is moving forward in the right direction. That's what we need from her, to keep moving forward. In the next couple months we need the miracle to continue. We need her to start hitting some of the big milestones, like eating from a spoon, laughing, rolling over from her back to her tummy, sitting up and eventually crawling. All of these are milestones babies typically start hitting in the upcoming months. We've seen progress but we are praying and believing for more. He is faithful.

Thank you for agreeing with us in prayer for more and more progress.

I'm so proud of my sweet girl. She's been a trooper through all the poking and prodding. Her life is such a testimony to the greatness of God and His ability to do the impossible. Today her doctor told us Ellis is "laughing in the face of medicine". One thing I know for sure, this girls gonna keep on laughing.

Sarah Rodriguez Rhodes

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Ellis Update: Today was a hard morning, guys. We got to the hospital & things just felt all wrong. I don’t know how to explain it other than that. Then the anesthesiologist had issues with some secretions Ellis was having that we were told amplified her risk during the surgery while under anesthesia. Given the past things we’ve walked through, we just decided it wasn’t a risk we were at all willing to take. So we made the decision to go home, re-group & do the surgery another day. Since the surgery is elective we had our medical teams full support in this decision. We are home now & doing well. This wasn’t an easy decision to make. For months we’ve prepared mentally, emotionally, schedule-wise, financially etc for this day. But we have to be lead by peace. And if those giving her medical care also weren’t completely at peace, it just wasn’t the right time, for whatever reason. I don’t always understand the “why” but I won’t always & I’m ok with that. We appreciate your prayers & promise to keep you informed of when her surgery will be in the coming months. Also, the day wasn’t a complete loss...Ellis did get to hang with the cute hospital dog-so at least that part was a win ☺️ Looking for some kind of humor-it’s been a rough day.

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